Summer MS Connection

Summer MS Connection

SUMMER 2012
WESTERN PENNSYLVANIA CHAPTER
MS CONNECTION NEWSLETTER
THANK YOU WALK MS
PARTICIPANTS!
INSIDE 04
THIS
ISSUE
LIVING WITH
MS: GIVING
CARE
06
08
12
HOW I
COMMUNICATE
ABOUT MS WITH
MY CHILDREN
THE ROAD
OF A
RESEARCHER
MY STORY:
NANCY
WEILAND
2
MS CONNECTION: SUMMER 2012
LETTER FROM THE PRESIDENT
MS NOW
ANNE MAGERAS
PICTURED WITH REACH
COORDINATOR SHERIE
LAMMERS AT THE 2011
ADVOCACY CONFERENCE
CONNECT WITH
US ONLINE:
Western Pennsylvania Chapter
nationalMSsociety.org/PAX
pax@nmss.org
Like us:
/MSWesternPA
Follow us:
@MSWesternPA
Watch us:
user/NationalMSSociety
On the Cover:
Beaver Walk MS Participants
Nearly 12,000 neurologists and investigators convened in New Orleans in
April to present findings at the American Academy of Neurology’s annual
meeting. Over 500 scientific presentations and display posters focused on
research to stop MS, restore function, and end MS forever. The MS sessions
were often standing-room only, and appear to get bigger every year. Among
these were the latest results from pivotal clinical trials of emerging MS
therapies, possible risk factors, underlying disease mechanisms, rehabilitation
approaches, CCSVI, and much more. For free access to the conference
abstracts (brief summaries), go to the American Academy of Neurology’s
Website, http://www.abstracts2view.com/aan/
In most cases, studies presented are considered preliminary. Many of the
results will be analyzed more thoroughly, and usually published in peer-
reviewed science and medical journals. Confidence in a study’s findings grows
when it is repeated by others, with similar results.
• STOP: Among studies reported were these first results from late-phase
clinical trials. If these treatments are found to be safe and beneficial, some of
them may come on the market in 2012 and 2013. Other studies focused on
understanding benefits, risks and modes of action of available and emerging
therapies.
• RESTORE: Rehabilitation to address cognitive changes was explored. In
addition, several presentations focused on imaging techniques and pathology
findings related to Chronic Cerebrospinal Vascular Insufficiency and MS.
• END: Understanding risk factors that influence who gets MS, and also what
course their MS will take, is crucial for finding ways to prevent MS and
progression of symptoms. Among the presentations were studies that looked
at interactions of genes, gender, and vitamin D levels.
Please consider joining the MS NOW Research Revolution by clicking on the
Research link on the National MS Society website.
Sincerely,
Anne Mageras
Anne Mageras
Western Pennsylvania Chapter
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
LIVING WITH MS
WHAT ARE ADLâ&#x20AC;&#x2122;S?
BY BRIAN SIBENAC
AIDS FOR DAILY LIVING
FOR MORE INFORMATION
ABOUT THE FINANCIAL
ASSISTANCE PROGRAM
PLEASE CALL BRIAN
SIBENAC OR MARY LEE
JACKSON AT 1 800 3444867.
Living with Multiple Sclerosis is difficult but can be managed well
with the help of some equipment of Aids for Daily Living(ADL).
Here are some examples of items for getting ready in the
morning: bed cane or bed ladder, long handled bath sponge, sock
aide, long handled shoe horn, & button hooks. While eating a
few examples are: weighted eating utensils, scoop plates, cups
with handles, one handed can openers, and over-the-bed tray
tables. Also, these are some other examples of items to use during
your day: reacher, magnifier, furniture risers, and car caddie.
The National MS Society provides financial assistance for the
above items and many others to help you live with MS in a more
positive and independent way. We work with local durable
medical equipment vendors and also with a national mail order
catalog to place orders. n
NATIONAL MULTIPLE SCLEROSIS SOCIETY
Western Pennsylvania Chapter
1501 Reedsdale St., Ste 105
Pittsburgh, PA 15233
1-800-344-4867
nationalMSsociety.org/PAX
Chairman: David Strassburger, Esq.
Chapter President: Anne Mageras
Contributed Writing: Chapter Staff
Design: Jennifer Skinner
ÂŠ 2012 National Multiple Sclerosis Society,
Western Pennsylvania Chapter
Information provided by the Society is based
uponprofessional advice, published experience
and expert opinion. Information provided in
response to questions does not constitute therapeutic recommendations or prescriptions. The
National Multiple Sclerosis Society recommends
that all questions and information be discussed
with a personal physician.
The Society does not endorse products, services
or manufacturers. Such names appear here
solely because they are considered valuable
information. The Society assumes no liability
for the use or contents of any product or service
mentioned.
4
LIVING WITH MS
GIVING CARE
BY TERRI KUCZYNSKI, M.DIV., CT
All of us give care throughout our lives, whether
it is through holding a hand or helping with
daily needs from transportation to bathing.
We give care when we listen to another’s
sadness and when we fix a meal. We give care
when we send a card or manage medication.
Giving care to a loved one with MS can be very
rewarding and at the same time unbelievably
challenging. In some ways being a caregiver is
like using a battery-powered drill. At first the
drill is fully charged and the task at hand seems
to be manageable. As the charge dies down,
the task becomes more difficult until the drill
just can’t continue. The only way to go on is
to recharge the drill. If the caregiver does not
recharge over time, even the smallest task
becomes overwhelming.
RICK, DIAGNOSED IN 1991
MS CONNECTION: SUMMER 2012
SOME WAYS TO RECHARGE ARE TO:
01 Ask for help. Even simple things such as
getting a gallon of milk for you or providing
respite care so you can take a walk around
the block can make a big difference.
02 Join a support group or an Internet
chat room set up for carepartners. (See
‘Carepartners Connect’ on following page
for suggestions).
03 Take care of your body with proper
nutrition, exercise and sleep.
04 Do something — call a friend, write a
letter, read — that gives you a daily break
from the caregiving role.
05 Stay connected with community — don’t
become isolated.
06 Laugh. Watch funny movies or TV programs.
IF A CAREGIVER DOES NOT RECHARGE
OVER TIME, EVEN THE SMALLEST TASK
BECOMES OVERWHELMING.
Just recently I visited a friend who was caring
for her husband. We talked about the many
difficulties of caregiving. She talked about her
feelings of helplessness and shared that at times
she felt a lot of anger, which in turn made her
feel guilty. She went on to tell me that her
husband’s physical care could be overwhelming,
but keeping track of all the day-to-day activities
of life sometimes seemed crushing. She felt
NATIONALMSSOCIETY.ORG | 1-800-344-4867
weary and alone in this role that she was so
unprepared for. After we talked, I walked out of
the room and, when I turned to say goodbye, I
saw her struggling to help her husband transfer
from the sofa to a wheelchair. I then witnessed
the true meaning of giving care. In the middle
of the transfer, I saw them share a loving embrace.
It was very brief, but very intentional. At that
moment I could not tell who was caring for
whom. I saw two people caring for each other.
What a great way for both to recharge. n
5
Terri Kuczynski, M.Div., CT,
is a patient/family counselor
at the Rex Cancer Center in
Raleigh, N.C.
Originally published in CARE
eMagazine, Eastern North
Carolina Chapter
CAREPARTNERS CONNECT
There is a wealth of ways for carepartners to
connect online. Here are a few of them.
Those caring for someone with MS can
create their own website or visit another’s at
www.CaringBridge.org. Here, carepartners
can keep an online journal and photo gallery,
ask for help with tasks, and post updates
for friends and family who in turn can post
messages of support.
Today’s Caregiver at www.caregiver.com
includes a map, clickable by state, of area
support groups, and a special section where
caregivers can post their tips for others. It also
offers articles and information on everything
from nutrition tips to long-distance care.
The Well Spouse Association at www.
wellspouse.org is a nonprofit membership
organization that offers peer-to-peer support
and educates healthcare professionals and the
general public about the unique challenges
that “well” spouses face every day.
The National Family Caregivers Association
at www.thefamilycaregiver.org provides an
online forum for caregivers to post questions
or talk to others in similar situations.
The Society’s online community at www.
MSconnection.org offers a secure place for
carepartners to connect. Members can create
a personal profile to share posts, updates,
blogs, photos, videos and links, and search
for other members by demographics, shared
interests and more. The Society also offers
a page for carepartners at www.nationalMS
society.org/carepartners with information
and resources on accessible housing, hiring
home help and more. Carepartners can
also participate in the Society’s Online Peer
Connections program, www.nationalMS
society.org/onlinepeerconnections. Here they
select a peer support volunteer from an online
database and arrange to speak one-or-one
via email or telephone on an agreed-upon
topic. All conversations are confidential.
6
NEWLY DIAGNOSED
HOW I
COMMUNICATE
ABOUT MS WITH
MY CHILDREN
BY JULIE STACHOWIAK, PhD
I have twin girls who are now six years old. I was
diagnosed with multiple sclerosis a couple of years
before they were born, so it has always been
present in our little family. I guess there was
never a question about whether or not to share
my MS status with them — it was too big to hide.
One of my first memories of the girls really
understanding that I wasn’t entirely well was when
I had been reduced to tears by some incident.
MS CONNECTION: SUMMER 2012
One of my small daughters came to where I
was sitting on the ground with my head in my
hands and adjusted my collar, saying, “Here
you go, Mommy. I’ll take care of you.”
The experts will tell you (and I can confirm) that
young children pick up when a parent is not
feeling well. Child psychologists will tell you
that this can manifest as increased clinginess,
regression in terms of speech or potty-training
progress, or reversion to younger behavior
(such as needing a pacifier). Older children may
get worried that something terrible is happening
— that their parent will die, that they will die,
that they did something bad and whatever is
going on is all their fault. This may turn into
sleeping issues or nightmares, withdrawing
emotionally, or acting out at school.
Those same experts say that we should answer all
questions about our MS honestly and directly,
adjusting information as they get older. That
might, or might not, work for you. I know that
some people choose to keep their MS from
their children until they reach a certain age or
something happens where it must be revealed.
These parents may feel they are protecting their
children from the pervasive worry of having a
sick parent.
I think that it is an individual choice. We all
have to make our own way as parents. I can’t
tell you what to do — I cannot tell you that
you must be open about your MS with your
children.
JULIE STACHOWIAK WITH HER TWO DAUGHTERS
The only thing I can tell you with 100 percent
clarity is that it is impossible to show your
children too much love.
7
NATIONALMSSOCIETY.ORG | 1-800-344-4867
As far as my situation goes, I have chosen
to be very open with my daughters (in an ageappropriate way). I tell them when I am tired
and I tell them when I feel better and I make
sure that we do something fun and active during
those times. We discuss MS and I have tried to
explain to them what is happening in my brain.
They know that I don’t like it when music is
too loud or when we’ve been outside in the sun
for too long.
AS FAR AS MY SITUATION GOES, I HAVE
CHOSEN TO BE VERY OPEN WITH MY
DAUGHTERS ... I TELL THEM WHEN I FEEL
BETTER AND I MAKE SURE THAT WE DO
SOMETHING FUN AND ACTIVE DURING
THOSE TIMES.
I won’t say that I have handled it perfectly. I have
seen one of my daughters looking at me with a
furrowed brow too many times, while the other
one may come into my bedroom with “nightmares,” when I suspect she really just wants to
check on me. However, I do think that they are
considerate, gentle and compassionate. They
seem slightly less self-centered than some of
their classmates. They are not afraid of people
who are different — we have friends with
Down syndrome, who use wheelchairs and who
are hooked up to oxygen. My girls don’t seem
to see any of it, just the person whom they want
to tell about their Halloween costume or their
newest toy. I’m proud of that. n
SOCIETY RESOURCES
FOR FAMILIES
The Society’s “Family Matters” Web page
at www.nationalMSsociety.org/Family
Matters contains links to helpful brochures,
programs and resources.
Each issue of Keep S’myelin has fun,
engaging activities to help parents and
children learn about and discuss MS
together. Go to www.nationalMSsociety.
org/keepsmyelin for back issues and
subscription information.
Search for and download Society brochures
Plaintalk — A Booklet about MS for
Families for information on talking about
MS with family members and Someone
You Know Has MS for children at
www.nationalMSsociety.org.
Join the online “Family Matters”
community at www.MSconnection.org.
Watch the Society video “Parenting with
MS” at www.youtube.com/watch?v=
V93TG_0LJiA.
Diagnosed with MS in 2003,
Julie Stachowiak, PhD,
is the author of The Multiple Sclerosis Manifesto and
www.ms.about.com.
Originally published at www.blog.nationalMS
society.org.
8
MS CONNECTION: SUMMER 2012
CALENDER
RESEARCH
LOCAL PROGRAM
EDUCATIONAL TELECONFERENCE SERIES
2011-2012
Registration is free - reserve your space today!
THE ROAD OF
A RESEARCHER
BY MARCELLA DURAND
• Staying Healthy With Vitamins and Oral
Supplements, Thursday, September 13, 2012
Richard Ransohoff, MD, began
his long research career with
a Harry Weaver Neuroscience
Award from the National MS
Society.
Call 1 800 344-4867, option 1 or visit
nationalMSsociety.org/PAX to register or for
more information. n
“There wouldn’t have been a career, otherwise,”
he says. “I had no research track record — the
Society really took a chance on me.”
Helping People Live Life Better!
It was a chance that paid off big time. Dr.
Ransohoff’s research into the role of “chemokines,”
messenger proteins that play a role in the immune
system, may lead to new MS therapies. For his
groundbreaking research, he was chosen by his
peers as the 2012 John Dystel Prize recipient.
The prize is given jointly by the Society and the
American Academy of Neurology.
• Management and Rehablitation of
Advanced MS, Wednesday, July 18, 2012
Service...Knowledge...Commitment
THE ROLE OF CHEMOKINES
Standard & Complex Rehab Mobility Equipment and Positioning Devices
Equipment Repair Service Center
Vast Inventory of Wound - Ostomy - Urological Supplies
Oxygen - CPAP/BiPAP - Ventilators - Nebulizers & Neb Medications
Accessibility Consultation & Equipment - Stair Lifts - Ramps - Vehicle Lifts
Pharmacy Services - Consultations - Certified Immunization Pharmacists
In 1993, not too long after he received the
Weaver Award, Dr. Ransohoff made the discovery
that chemokines played an important role in MS.
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He and a colleague, Mari Tani, MD, at the
Cleveland Clinic had been studying mice with
EAE, an MS-like disease, when they found that
astrocytes, a type of brain cell, were producing
chemokines that attracted immune cells to the
mice’s brains. “It was like the disease process sat
9
NATIONALMSSOCIETY.ORG | 1-800-344-4867
up and talked to us,” he remembers. His team
then went on to study chemokines in immune
cells from people with MS, where they found
chemokine receptors on many of the cells
involved in the immune attack.
PAVING THE WAY
Dr. Ransohoff also showed that chemokines may
actually help determine whether nervous system
repair occurs during the course of MS. By deactivating a chemokine receptor called “CXCR2,”
he found that the development of myelin-making
cells was improved.
“The insights that Dr. Ransohoff’s discoveries
have provided could ultimately pave the way for
the development of a new class of drugs in MS
based on chemokines,” said Benjamin M. Segal,
MD, one of the nominators of Dr. Ransohoff for
the Dystel Prize.
With a research grant from the Society, Dr.
Ransohoff is now studying cell types with and
without chemokine receptors to clarify how these
cells participate in tissue damage and — with an
eye toward developing a future therapy to stop
disease activity — tissue repair. He also is returning the Society’s long-ago gesture of trust by
mentoring young researchers and teaching them
how to talk about their discoveries. “The theoretical
and conceptual side of science is invisible unless
you communicate it,” he says. n
Marcella Durand is the associate editor of
Momentum, the Society’s national magazine
THE ONLY BODY-CORE
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The most light-weight, comfortable
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For more information visit us on-line at
stacoolvest.com or call toll free 1-866-782-2665
10
MS CONNECTION: SUMMER 2012
SCHOLARSHIP
2012 AWARD RECIPENTS
BY PAM DIXON
The Western PA Chapter of the National MS Society is pleased to announce that scholarships have
been awarded to seven recipients who demonstrated a commitment to academics, community service
and involvement with Western PA Chapter of the National MS Society.
Each recipient received a $2,000.00 scholarship for the upcoming 2012-2013 academic year.
The National MS Societyâ&#x20AC;&#x2122;s scholarship program exists â&#x20AC;&#x201D; to help outstanding individuals who have
been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The
National MS Society Scholarship Program is for first-time college freshmen (of any age) only.
The program opens October 1 and closes mid-January 2013. For more information visit the website
at www.nationalmssociety.org/scholarship n
KAITLYN BLAIR
ASHLEY KRUISE
Indiana, Pa
Edinboro University
Major: Undecided
Erie, PA
Saint Francis University
Major: Physical Therapy
11
NATIONALMSSOCIETY.ORG | 1-800-344-4867
KYLE SURKOVICH
MARY WEAVER
Hollidaysburg, PA
Pennsylvania College of
Technology
Major: Graphic Design,
Photography, Webpage
Development
Franklin, PA
Penn State ErieThe Behrend College
Major: Speech Pathology
TODD SURKOVICH
THOMAS WEAVER
Hollidaysburg, PA
Lock Haven University
of Pennsylvania
Major: Athletic Training/
Pre Physical Therapy
Franklin, PA
Penn State Erie â&#x20AC;&#x201C;
The Behrend College
Major: History
STEPHANIE MOORE
Hookstown, PA
California University of PA
Major: Communication
Disorders and Sciences
Knowledge Is Power is a six-week, free,
at-home educational program for
people who are newly diagnosed. To
register call 1 800 344-4867, or visit
nationalMSsociety.org/knowledge.
12
MS CONNECTION: SUMMER 2012
MS ERIE CLINIC
RECEIVES NATIONAL
AFFILIATION
BY PAM DIXON & MARY LEE JACKSON
Northshore Neurosciences was recently
recognized by the National MS Society as a
Center for MS Comprehensive Care. The
newly affiliated center is directed by Erica
Grazioli, D.O., and is located in Erie, PA at
UPMC Hamot.
The Centers for Comprehensive Care:
• Focuses on the experience of the patient
• Recognizes the benefit for patients to have
access to a full array of medical, psycho-social and rehabilitation services to address the
varied and often complex issues related to
living with MS
• Acknowledges clinical sites that demonstrate
the ability to provide coordinated and comprehensive MS care to patients, while allowing flexibility in center operations and staffing models
• Involves a strong collaboration between the
Society and center
• Recommended by a National Comprehensive Care Review Committee. n
NORTHSHORE NERUOSCIENCES/UPMC HAMOT
MULTIPLE SCLEROSIS CENTER RECEIVES NATIONAL
AFFILIATION
Denise Schlabach, RN, Rebecca Parkhurst, P.A.-C., Director Erica Grazioli, D.O.,
Allison Boyd, P.A.-C., Mary Lee Jackson, NMSS staff member
MY STORY
NANCY WEILAND
BY TAYLOR MORSILLO
(currently serving in the Peace Corps)
Diagnosed 11 years ago, Nancy, 57, of
Pittsburgh, PA used this life change not as a
pathway for anger and resentment, but as a
vehicle for change and a new outlook on life. “I
have never been mad about having MS, true the
medications and various treatments have been
difficult and frustrating, but I have found that
music is my ultimate medicine.”
She was working full time at Saks 5th Avenue
in Pittsburgh when she was diagnosed. Having
always been a working woman with a full
schedule, Nancy turned to the National MS
Society after diagnosis as an avenue for
13
NATIONALMSSOCIETY.ORG | 1-800-344-4867
support, information, and a way to be involved
with the MS community. “Volunteering
revitalizes you, it gives you something to strive
for, something to focus on.”
An activist in the MS community for the past
ten years, Nancy spends much of her time
participating in volunteer activities. Three or
more days a week she can be found filing
papers, calling and answering phones, stuffing
envelopes among many other activities.
“Volunteering is a daily learning process, you
never know what to expect, because each day is
different from the last.” Knowing that she can
do something, no matter how big or small the
task helps to build her confidence. “I am
surrounded by the most positive people there.”
“VOLUNTEERING REVITALIZES
YOU, IT GIVES YOU SOMETHING
TO STRIVE FOR, SOMETHING TO
FOCUS ON.”
The saying “I may have MS, but MS doesn’t
have me” makes Nancy laugh, “that’s crap, its
there, its something that doesn’t go away,
sometimes its controllable, sometimes its not.
Living with MS is a moment-by-moment
lifestyle. Yesterday I was spring cleaning, today
I could barely walk.” Nancy finds comfort in
various forms of physical and mental exercise
like yoga and word search puzzles and solace in
any form of music.
According to Nancy, there are some things that
someone living with MS cannot overlook; a good
MS doctor, other doctors that work with people
who have MS, an understanding caretaker, and
support from family and friends. These things
are priceless to her. Her husband Jim has been
a huge part of her life, “I am literally unable to
imagine doing anything without him. He is my
support system, totally understanding and
caring.”
Nancy continues to stay busy volunteering at the
Western PA Chapter, and doing makeup for private clients. The 9-5 lifestyle she had for almost
20 years is in the past, not forgotten, but not
missed either. “Life with MS is all about making
decisions for YOU, its important to be open to
the life changes that will be made as the years go
by.” Although MS has altered her physical life
it has not broken her inspiring spirit and caring
nature. “Love and compassion is not a choice,
it’s a way of living.” is how her nephew Dave
Weiland describes her. n
WEDNESDAY, SEPTEMBER 12, 2012
(412) 26-6347
Fox Chapel Golf Club
Guest Speaker: Zoe Koplowitz
Register Online: nationalMSsociety.org/PAX
14
RAY, DIAGNOSED IN 2003
MS CONNECTION: SUMMER 2012
few real-world examples of accommodations
that have worked for people with MS at
www.askjan.org/soar/MS/MSex.html.)
I then pointed out two things to remember
about accommodations:
01 You must be able to perform the essential
functions of your job. The ADA (Americans
with Disabilities Act) does not require
employers to reduce essential job functions,
but you can ask to change how you perform
an essential job function. Usually employers
decide which job functions are essential.
MONEY MATTERS
WHAT ARE JOB
ACCOMMODATIONS
AND HOW DO
I GET ONE?
BY KRIS GRAHAM
At the Society’s Information Resource Center,
where people with multiple sclerosis and their families
can call an MS Navigator® at 1-800-344-4867 for
help on a range of topics, we recently received a
question about how to obtain accommodations
when multiple sclerosis starts to get in the way of
doing your job. So here’s what I told our caller.
First, I explained what accommodations are.
They can be things like new equipment or
changes to existing equipment. Another type
of accommodation may be a change to your
work routine, such as hours worked. (Read a
02 Your employer does not have to provide you
with your first choice in accommodations. The
employer has to provide an accommodation
that is reasonable and effective, if available
— so be ready to discuss alternatives.
Next, we discussed whether or not the ADA
applied to the caller’s situation. People can request
reasonable accommodations under the ADA if:
n
They work for an ADA-covered employer;
n
They are “qualified” to do the job; AND
n
They are a person with a disability as defined
by the ADA.
ADA-covered employers include private employers
with 15 or more employees, all state and local
governments, employment agencies and labor
unions. If you’re not sure whether your employer
is covered by the ADA, contact your regional ADA
Center (look up your region at www.adata.org)
or visit JAN (the Job Accommodation Network)
at www.askjan.org. Both organizations are free
and confidential resources. If your employer
15
NATIONALMSSOCIETY.ORG | 1-800-344-4867
is not covered by the ADA, contact an MS
Navigator® at 1-800-344-4867 for assistance in
exploring other possible legislation that may
protect you.
n
What accommodations or changes to your
work will be effective?
n
When should you speak with your employer
(or potential employer)?
“Qualified” to do the job means that someone
has the “skills, experience, education, or other
requirements” of the position, and “can perform
the essential functions of the position with or
without reasonable accommodation.” (For
more information, download the Disability
Law Handbook — Employment and the ADA
for free at www.swdbtac.org/html/publications/
dlh/employment.html.)
n
Who should you involve in the conversation?
n
How should you follow up on your request?
n
What are your rights if things go wrong?
The ADA’s definition of a “person with a
disability” now includes most people with MS,
thanks to the passage of the ADA Amendments
Act and updated Equal Employment Opportunity
Commission regulations. Although people with
MS do not necessarily have to disclose their
diagnosis, they must provide enough information
for the employer to understand that they are a
person with a disability. For more about workplace disclosure and a helpful worksheet, visit
www.nationalMSsociety.org/disclosure.
My next advice to the caller was to be prepared!
Before you request accommodations, make sure
you can answer all of the following questions:
n
How is MS affecting your job, potential
job, or application process?
n
Why are you requesting accommodations?
n
What information will you need to provide
to your employer (or potential employer) to
clarify the impairment affecting your work
and the accommodation that will remedy
the situation?
Finally, I told the caller that if she had additional
questions, an MS Navigator would be standing
ready for her call. n
Kris Graham is the employment manager for
the National MS Society.
THESE RESOURCES CAN PROVIDE
MORE HELP AND INFORMATION
The Win-Win Approach to Reasonable
Accommodations, available at www.national
MSsociety.org/accommodations.
ADA — Your Employment Rights as an
Individual With a Disability, available at
the U.S. Equal Employment Opportunity
Commission’s website at www.eeoc.gov/
facts/ada18.html.
Employees’ Practical Guide to Negotiating
and Requesting Reasonable Accommodations
under the Americans with Disabilities Act,
available at www.askjan.org/EeGuide.
JAN’s Searchable Online Accommodation
Resource (SOAR) at www.askjan.org/soar/
index.htm.
16
MS CONNECTION: SUMMER 2012
SAM’S CLUB
STATE
COLLEGE SAM’S CLUB
EMPLOYEES
TAKES A BOLD STEP IN THE
FIGHT AGAINST MS!
BY KIM FECICH
After six weeks of fundraising earlier this year, in over 600 clubs across the country, Sam’s Club presented
a check to the National MS Society for $1.5 million, nearly $400,000 more than last year!
Through grassroots fundraising that included cookouts, hot chocolate and MS bracelet sales, employee
bake sales, bowling nights, and even making and selling orange balloon animals, Sam’s Club employees
raised an amazing amount of money to help people living with MS.
In Western Pennsylvania, 10 local Sam’s Clubs raised nearly $33,000 locally for the Western PA
Chapter! In addition, Sam’s Club employees became ‘masters of the grill’ at Walk MS: Pittsburgh this
year by preparing lunch for nearly 3,500 people!
Thank you Sam’s Club for your continued support and involvement in MS Movement in Western PA! n
DO-IT-YOURSELF
FUNDRAISING
BY SUSAN COOK
This is an opportunity for people with a deep commitment to the MS cause to raise awareness and critical
funds for the MS Movement in new and creative ways. From the MS: Ride to the Rockies, Miles for Smiles
and Monster Stomp, people in Western Pennsylvania are committed to fighting MS Now! Creative ideas are
supported by the Western PA Chapter through the online web participant center, in which donations can
be contributed and marketing materials can be personally created. Also the page provides an overall explanation of the event and important messages from each individual DIY participant. The DIY platform allows
participants to expand their fundraising efforts and also access tools, ideas and direction from the National
MS Society’s, DIY coordinator. For more information about creating an event please contact Susan at
412-261-6347 the Western PA Chapter. n
17
NATIONALMSSOCIETY.ORG | 1-800-344-4867
UPCOMING
MS EVENTS
LOBSTER FEST, FRIDAY, SEPT. 28, 2012
(814) 696-1017
Bavarian Hall, Duncansville
Dining, Dancing, Auctions and Door Prizes!
WINE TOUR FOR A CURE, FALL OF 2012
(814) 464-2900
The Erie office will be hosting a winery tour,
visiting 5 wineries via bus.
UNFORGETTABLE RIDES.
UNBELIEVABLE DESTINATIONS.
BIKE TO CREATE A
WORLD FREE OF MS!
BY HANNAH SPEAR
Whether you are a novice
cyclist, looking to get back
in the saddle, or a devoted
yearly rider, these eventa
that you donâ&#x20AC;&#x2122;t want to miss!
Ride or volunteer for a
weekend to remember!
Register online at nationalMSsociety.org/PAX
KEYSTONE COUNTRY RIDE
July 28 & 29, 2012
This two-day loop will begin Saturday morning
with cyclists gathering at Hollidaysburg Jr. High
School (Altoona) to begin the 150-mile ride
across the rolling hills of PA. Join us to enjoy all
of the luxuries of State College at the overnight!
COOK FOREST RIVER RIDE
September 22. 2012
This one-day bike ride that takes cyclists on a
gently rolling route along the Clarion River.
There are two route options: 35 miles (perfect
for beginner and recreational cyclists) and 60
miles (for those looking for more of a challenge).
Join us for this fun fall ride for cyclists of all
levels!
18
MS CONNECTION: SUMMER 2012
rode to each finish line, and enjoyed an array
food and beverages before heading home to
recuperate from their incredible weekend
accomplishment.
CHALLENGE ACCEPTED
THANK YOU,
BIKE MS CYCLISTS
BY HANNAH SPEAR
Over the weekend of June 9 and 10, nearly 1,400
cyclists converged at Glick Fire Equipment
Company in Zelienople to participate in the 2012
Bike MS: Western PA Escape. Cyclists accepted
the challenge and took to the country roads of
Western Pennsylvania to ride 150 miles in our
fight to stop MS. Despite the grueling hills of
Western PA and soaring summer temperatures,
our cyclists endured and powered through with
determination and perseverance.
Our fully supported ride not only connected
cyclists to more than 100,000 other riders across
the country, but also to a growing movement to
create a world free of MS. After heading nearly
80 miles north, cyclists came together and
celebrated their accomplishments at Allegheny
College. Then, for the first time in Western PA
Chapter history, cyclists had the option of
taking the traditional day two route to Lake Erie,
or returning to our original start line in
Zelienople. Approximately half of the cyclists
With over $90,000 in sponsorship alone and
cyclists continuing their fundraising efforts until
July 6, we are anticipating to raise over $900,000!
These essential funds will enble us to serve the
7,500 people living with MS throughout
Western PA, while continuing to fund cutting
edge research.
In yet another challenging year, our riders,
volunteers, fundraisers and sponsors showed
their dedication by making the 2012 Bike MS:
Western PA a success! n
Thank you to our sponsors: Fed Ex Ground (presenting
sponsor) SAMâ&#x20AC;&#x2122;s Club, Armstrong, Comcast, GNC, Biogen,
EMD Serono, Diamondback, Dicks Sporting Goods,
Pittsburgh Brewing Company, Highmark, Janney
Montgomery Scott, UPMC, Acorda, RG Signs, US Food
Service, Pella. A special thanks to: Goldwing Road Rider
Association members, PA & OH Amateur Radio Operator
Clubs and the Western PA Wheelman
T he L if t P rofe ssional
AU T H O R IZED
D I S T R I B U TO R
C H EN E Y S TA I R &
W H EEL C H A I R L I F T S
B ar r ie r Fre e St air lif t s
275 Cur r y H ollow Road
Pit t sb urgh , PA 1523 6
412- 653 - 6 45 0
1 - 8 0 0 -28 8 - 5 6 2 5
FA X 412- 653 - 6 415
NATIONALMSSOCIETY.ORG | 1-800-344-4867
WALK THIS WAY
SHARE IN THE HOPE
FOR THE FUTURE.
BY HANNAH SPEAR
The 2012 Walk MS campaign got
community members moving and left
them moved! A special thank you goes out
to everyone who came to one of the 15
Walk MS events throughout 26 counties
of Western Pennsylvania. By joining the
Walk MS movement, you joined our fight to stop
MS. You shared a remarkable achievement with
nearly 8,000 other Western Pennsylvania walkers.
Most importantly, you made a difference by
helping to raise over $800,000 toward research
and services for people with MS living in Western
Pennsylvania!
Below are some of the highlights YOU can be
proud of:
• Walk MS: Pittsburgh was held on April 22nd,
and despite cool temperatures and grey skies,
walker spirits could not have been higher!
Nearly 3,500 people came out to Point State
Park and with nearly $400,000 raised; we’re
close to our goal!
• Walk MS: Meadville is back! After a one-year
hiatus, Walk MS: Meadville came back to the
scenic Roche Park on April 29th. Over 100
walkers raised close to $10,000! Thanks for the
support!
• Erie’s 2012 walk was full of sunshine and enthusiastic walkers on May 5th! Over 600 members
19
of the community came to Presque Isle State
Park and raised nearly $50,000! Way to go
Erie!
• Hollidaysburg Walk MS event was
outstanding! On April 22nd, over 800
people were in attendance to help make it
one of the largest events yet!
• The nearly 400 participants of Walk
MS: Washington converged on Tanger
Outlets on April 29th and knocked it
out of the park raising over $30,000!
Walkers got the added bonus of outlet
coupons to indulge in some afternoon
shopping as a reward for their efforts!
We unite as a community during Walk MS to
make a powerful statement – to keep us moving
toward a cure of multiple sclerosis. Whether you
walked, volunteered, donated or fundraised, we
thank you for getting involved. You are an
important part of the Walk MS movement.
Remember, each step you take brings us closer to
a world free of MS. We look forward to working
with all of you for a great 2013 Walk MS season,
and please stay tuned for walk dates, locations
and more. n
Thank you to our sponsors: Teletracking (presenting
sponsor), KDKA TV, KDKA Radio, SAM’s Club, EMD Serono,
Peoples Natural Gas, Betsy Ann Chocolates, The Pittsburgh
CW, Acorda, Biogen, Excela, TR&C, Wireless Zone, Eat’n
Park, Sincerely Yogurt, Texas Roadhouse, Snyder, Pepsi,
Sarris Candies, Toshiba, Mylan, Old Time Coffee, Charwell,
Cool 101, Ainsworth Pet Nutrition, Fox 66, Your Erie.com,
UPMC Northwest, ABC, Northwestern Rural Electric, Jet 24,
Northwest Savings Bank, American Refining Group, Froggy 98,
WTAJ, Sunny 106, Imler’s, Papa Johns, Questcor and more!
20
RUN TO STOP MS
MS CONNECTION: SUMMER 2012
UPCOMING
DICK’S SPORTING MS GOLF EVENTS
GOODS PITTSBURGH ERIE GOLF OUTING, AUGUST 24, 2012
MARATHON
BY HANNAH SPEAR
This year, the Western PA chapter once again
joined forces with the Pittsburgh Marathon as a
Charity Partner. Thirty seven marathon runners
dedicated their participation to “Run to Stop MS”
and raised over $32,000!
Congratulations runners on being a part of our
best year thus far! All 37 runners on the 2012 Run
to Stop MS Team have been affected by multiple
sclerosis, either personally, with a family member,
or close friend struggling with the disease.
“This is an inspirational team and I was honored
and blessed to meet and run with all of them,”
Ellen Stewart, Run to Stop MS Coordinator said.
Run to Stop MS is a campaign that allows you
to run or walk in a Pittsburgh Marathon event
or any running event, in support of our fight to
stop MS. Simply register on our website and let
us know what event you are participating in. We’ll
give you the tools you need to help you “Run to
Stop MS”! n
(814) 464-2900
Riverside Golf Course, Cambridge, PA
Format is 4 person scramble.
ANNE E. BARNES MEMORIAL
TOURNAMENT, SEPTEMBER 6, 2012
(814) 696-1017
Iron Masters Country Club, Roaring Spring
COLLEEN M. MCGUIRE MS CLASSIC,
SEPTEMBER 24, 2012
(412) 261-6347
Laurel Valley Golf Club, Ligonier
29th Annual Golf MS, renamed the
Colleen McGuire Classic in Honor of the
Western Pennsylvania Chapter’s Former
President.
REGISTER ONLINE AT
nationalMSsociety.org/PAX
Heather Mayer, MS, PT
PT / Neurological Specialist
The Village at Pittsburgh Mills
724-274-4333
1020 Village Center Drive, Suite N2D
724-274-4303
Tarentum, PA 15084
pghmills@westarmtherapy.com
21
NATIONALMSSOCIETY.ORG | 1-800-344-4867
SM
22
MS CONNECTION: SUMMER 2012
FAMILY NIGHT at the ball park
JERRY UHT PARK,
ERIE SEAWOLVES
The National MS Society and the Erie
Seawolves would like to invite you to Throw
Out The First Pitch!
Register today for your chance to throw out
the first pitch at the Erie Seawolves game on
Friday, August 17, 2012.
BY MARY LEE JACKSON
Name: __________________________
Enjoy the Erie Seawolves as they take on the
Harrisburg Senators with an all- you- can-eatbuffet!
Address: ________________________
Date:
Friday, Aug. 17, 2012
City: ____________________________
State: ______ Zip Code: ___________
Daytime Tele: ____________________
Time:
Gates open at 5:45 pm
Buffet starts at 6:00 pm
Evening Tele: _____________________
Game time is 7:05 pm
Entries should be postmarked by August 10th
to the Erie Office 2115 West 8th Street. Erie
PA 16505. Winner will be notified on
Monday, Aug.13th.
Location: Jerry Uht Park
110 E. 10th St., Erie, PA 16501
Program Cost: Person with MS: Free
Adults: $15.00 per person
Kids: $10.00 (14 & under)
Price includes reserved seating
and the buffet dinner!
Registration Deadline: August 10, 2012
QUESTIONS: PLEASE CONTACT MARY LEE
AT 814-464-2900
TICKETS FOR BOTH EVENTS WILL BE
AVAILABLE AT THE WILL CALL WINDOW
ON THE DAY OF THE GAME.
23
NATIONALMSSOCIETY.ORG | 1-800-344-4867
FAMILY NIGHT at
PEOPLE’S NATURAL
GAS FIELD,
ALTOONA CURVE
BY PAM DIXON
ORDER TICKETS ONLINE AT
nationalMSsociety.org/PAX
Name: _______________________________
Address: ______________________________
City: _________________________________
State: __________ Zip Code: _____________
Enjoy the Altoona Curve as they take on the
Trenton Thunder with Fireworks following the
game!
Date:
Sunday, Aug. 12, 2012
Time:
Gates open at 5:00 pm
Game time is 6:00 pm
Daytime Tele: __________________________
r Altoona Curve Game, 8/12/2012
r Erie Seawolves Game, 8/17/2012
Person(s) with MS (free):
_____________________________________
_____________________________________
Location: Peoples Natural Gas Field
1000 Park Ave. Altoona, 16602
Program Cost: Person with MS: Free
Adults: $7.00 per person
Price includes Terrace Level Seating and One
Curve Card Per Group!
Registration Deadline: August 1, 2012
For more information, please contact Pam at
1 800 344-4867.
_____________________________________
# of Adult Tickets: _______ = $ ___________
# of Kid Tickets: _______ = $ ____________
Total Amount Enclosed: $ ________________
# of Wheelchair Seats: ______
# of Limited Mobility: ______ (can NOT do steps)
Return to: NMSS, 1501 Reedsdale St., Ste 105
Pittsburgh, PA 15202
NON-PROFIT
ORGANIZATION
U.S. POSTAGE
PAID
Pittsburgh, PA
Permit # 3047
1501 Reedsdale St., Ste 105
Pittsburgh, PA 15233
MS KILLS CONNECTIONS
CONNECTIONS KILL MS
By joining MS Connection, you’ll be able to make meaningful
connections when, where and how you want with easy access to
the best content and resources the MS community can bring you.
You’ll learn about the topics that are most important to you,
connect with people you want to connect with, and have expert
MS information and opinions right at your fingertips.
Visit www.MSConnection.org and register today. n
MS CONNECTION
COMMUNITY -
WHAT IF EVERYONE WHO
CARES ABOUT MS COULD
JOIN TOGETHER IN ONE
PLACE?